Life on another level: The view from my wheelchair
Caroline has lived with MS for 35 years, and secondary progressive MS for the last few years. She tells us how she's managed the transition to using a wheelchair full time.
I've had secondary progressive MS probably for the last three or four years. I say "probably" because I first read it in my notes after an MS nurse visit, which was quite a shock! Though, to be fair, with MS, I‘ve learnt to expect the unexpected. I'd realised my symptoms kept worsening instead of sometimes getting better like they had before. Still, seeing it written down hits differently.
In the 35 years since my initial diagnosis with MS, I’ve often described my legs as being ‘badly behaved’.
In the early days, I worried about being “confined” to a wheelchair, and I felt a bit of a failure when I finally “gave up” walking. I sometimes still crop the chair out of photos. I think this is probably down to a mixture of pride, denial, and feeling that they're not exactly pretty. Maybe I just don't want the chair to define me in the way it might to others who aren't using one.
But I've no issue using a wheelchair. I don't want to waste my energy on that.
Using ‘furniture walking’ to balance at home
Sixteen years ago, I could walk around Norwich for the day. Fast forward to last spring when I transitioned to using my wheelchair full-time, both inside and outside my home.
As my mobility decreased, I used ‘furniture walking’ for balance inside the home. I then moved over to using a ‘rollator’, a wheeled seat that made me look rather like a ‘Racing Granny’ toy. It gave me support, and when I laid a tray on top of the seat, it allowed me to move things around that I could no longer carry.
Walking with Fampyra
Around 10 years ago, as my gait became poorer, I took the drug Fampyra (fampridine) on the recommendation of my MS nurse. It helps signals move along nerves, stimulating muscles to work. I first took a month’s free trial of the drug, which showed that I was one of the lucky ones whose walking speed improved.
I was also lucky to be able to pay for Fampyra myself, as it's not available on the NHS in England (only in Wales, Scotland and Northern Ireland). But the situation in England is going to be looked at again sometime in 2025.
I had to stop taking it after three years when an annual blood test showed that it was affecting the proper functioning of my kidneys. But I’m very thankful for that additional time ‘on my feet’.
Life using a wheelchair takes a little longer
After stopping Fampyra, my walking ability didn’t dramatically ‘fall off a cliff’. It gradually worsened until I didn't feel safe standing up.
Using my wheelchair, I experience life at a different, lower, level. Things generally take a lot longer to complete in a wheelchair.
To make a simple cup of tea, I have to:
- lock the brakes
- stand up on my wobbly legs
- grab a mug, tea bags, and fill the kettle
- sit back down
- pour boiling water carefully
- manoeuvre to the fridge for milk
- carry the milk one-handed while wheeling back to the mug
- wedge a tray on the seat of my rollator to carry the mug around the house
It’s like learning a Strictly dance move!
Getting things out of high kitchen cupboards is harder, and my cat, Stanley, is not much help! So, I keep regularly used items on the worktop.
Any food prep is done on the kitchen table, although cooking from scratch is more limited these days. And don’t get me started on showering and drying the wet room floor so I don’t leave mucky circles behind me!
On the plus side, though, as a wheelchair user, I get substantially reduced rates at concerts, theatres and the like, with a carer often accompanying me for free. Some of my favourites, like the Royal Opera House and Snape Maltings, have excellent discounts. It’s nice to occasionally be a friend with benefits rather than one with problems!
